CVI (Cerebral Visual Impairment): a project
co-financed by Europe
Improving support for children with a cerebral visual impairment
Throughout the EU, rehabilitation centres specialising in the support of young people with a visual impairment are receiving more and more cases of children with central vision disorders and low vision.
To date, our services have developed methodologies and procedures to support children whose visual impairment is related to eye dysfunction. When the visual impairment has a cerebral origin, the impact on daily life is very different for the child, and standard coping mechanisms do not work. The number of cases has greatly increased with the improvement of medical knowledge, as it was not possible previously for them to be identified. The major challenge for our organisations today is to develop tools and methods – standards for our organisations – that will contribute to improving the support of children with a cerebral visual impairment.
Our experience with these children demonstrates the need for a specific approach to understand the impact of this impairment. Despite the improvement of scientific knowledge, the methods of support all too often remain individual, isolated procedures without dialogue between organisations. It is important that we work together to develop a coherent and multidisciplinary approach between countries.
The objective of the CVI project is, therefore, to collate all the experiences of the members of the partnership and to develop common tools and protocols in order to improve the support for children with a cerebral visual impairment.
In this project, 9 partners from France (project coordinator MFAM, CRDV of Clermont-Ferrand, IRSAM of Marseille), Belgium (IRSA of Brussels), Quebec (INLB), The Netherlands (Royal Dutch Visio), Spain (University of Valladolid, ASPAYM Foundation) and Croatia (Vinko Bek Centre of Zagreb) will combine their skills and experiences in order to develop different tools:
- a methodology for the multidisciplinary evaluation of cerebral visual impairments
- an observation tool for the family and those close to the child, in addition to the evaluation tool
- an “individual passport” as a tool to describe the consequences of cerebral visual impairment for the child in everyday life, a tool to help understanding for those around them
These tools will be tested with a sample of targeted people in each country, and the partnership will develop a training plan to enable professionals to use the assessment protocol and the tools created.
We will develop the following project methodology:
1- A phase of construction and setting of a process for the EU standard (October 2015 – April 2017): Development of a common protocol based on medical diagnosis, evaluation and shared observations (parents and professionals) which will offer some tools for this process: an evaluation tool, a questionnaire for gathering observations in all daily life situations, and the individual passport for a better understanding of the child.
2- A phase of validation (April 2017 – April 2018): the experimentation period with the aim of validating the process and tools.
3- A phase of construction of a training curriculum (January – September 2018): development of a training curriculum for professionals in the use of the procedure and the tools (in parallel with the end of the 2nd phase).
4- A phase of dissemination and communication (throughout the period of the project: October 2015 – September 2018) sharing information through websites and flyers, to all existing networks (ENVITER, the francophone network, EASPD, EBU, etc.) and a conference planned for September 2018 in each country.
The partnership will be led by MFAM, to ensure the follow-up of all activities with the aim, at the end of the project, of enabling all kinds of organisations concerned with cerebral visual impairment to use the identified and validated tools/products for the benefit of children with a cerebral visual impairment. During the project, partners will work together during the 6 planned meetings and between the meetings, according to scheduled plans agreed by all the partners, using existing communication tools (skype, e-mails, etc).
The outcomes of the project will concern at least 5000 users, and, in the future, more than this figure (especially if we count all the indirect users such as relatives, parents, teachers…). They will be free for use by all kinds of organisations in Europe concerned with this issue.
This project is the result of the work of two networks: the ENVITER network (The European Network for Visual Impairment Training Education and Research) and the réseau francophone en déficience sensorielle et du langage (the Francophone network in sensory and language deficiency), from which the partners of the project are drawn.
This project is co-financed by Europe for a period of three years between October 2015 and September 2018 under the European ERASMUS+ programme which allows the involvement of a partner from Quebec in the project.
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